Revisiting community engagement methods in the context of data science research and big data use in South Africa

Abstract

Significance:
Effective community engagement for the use of large data sets in health research is faced with challenges similar to those in investigator-driven research. The scope of community engagement has evolved in high income countries to embrace citizen science by communities and regulators to build trust in data science research. In South Africa and other low- and middle-income countries, with varying levels of literacy and the influence of pre-existing beliefs and past negative experiences with research, advisory committees of diverse stakeholder composition still have a role to play in protecting the rights of researched communities